When I first got the diagnosis, I initially went into research mode, reading every single thing I could– every article, every single comment in patient support groups, and keeping a journal to track my symptoms.

This has always been my normal approach to dealing with health issues, and I had expected it to be the only way to deal with mast cell, as well.

However.

A few months into the process, I attended an in-person support group, where I met someone who had recovered from the same condition as me, using the Dynamic Neural Retraining System.

I’m going to be honest with you. I had never heard of DNRS before, and never would have done it if I hadn’t met someone in person who had recovered.

It took a lot for me to overcome my skepticism. In fact, I was still fairly skeptical when I began the program — I just started doing it anyway, because one of my doctors was strongly urging me to do it, and I figured I had nothing to lose.

But the more I have been doing the program– I’ve been doing it for an hour a day, for five months now– the more I understand it, and truly believe in it.

How does DNRS work?

DNRS focuses on the idea that many complex, chronic illnesses can actually be the result of a brain that is stuck in a chronic state of fight or flight.

In DNRS, this is termed limbic system dysfunction. (The limbic system is the part of the brain that regulates our emotional and behavioral responses, and also our response to threats– the fight or flight mechanism. It includes the amygdala, which causes us to feel fear, and the hippocampus, one of the most important parts of the brain for memory).

If you look at the stories of the different people who have recovered using DNRS, you’ll find that the symptoms they had were all very different.

In DNRS, the focus is not on the symptoms– it’s on rewiring the brain.

DNRS relies the concept of neuroplasticity– meaning the brain can change, based on new experiences.

If the brain can be changed by trauma– whether it’s emotional or physical– into a chronic state of fight or flight– it can also change back into a healthy state.

That’s where DNRS comes in. When you do the program, you are essentially following a series of steps, writing exercises, and visualizations– every day– to help the brain form new, healthy pathways.

It’s more than just positive thinking– it’s more like a practice.

I think of it like this. We all know we should think positively. We all know we should occasionally do things to calm down our system, such as meditate.

But DNRS really takes it a step further. It’s not just about relaxation– it’s actually about building new brain pathways.

In the five months I’ve been doing DNRS, I’ve actually felt this happen. I almost think of my brain as like a construction zone.

Since doing DNRS, I’ve actually felt my brain change, in a way that totally matches up with some of the things I’ve learned about the brain, emotion, and memory, in my science classes. (I’ve actually taken a neuroscience course, which really helped me to understand what was going on).

Over these five months it’s become much easier for my brain to get out of fight or flight and access happy emotions and memories, because I literally spend an hour every day activating those neural pathways.

The program isn’t some magic thing that will only work for some people. It’s about practice. Practice makes perfect. If you really do it for the recommended time– a minimum of an hour a day, every day for at least 6 months– you will see results.

Getting the brain out of its limbic system trauma loop.

So, if you read my blog now, you’ll see that I don’t talk about my specific mast cell symptoms very much. Of course, this is the complete opposite of the approach I’d planned to take.

But one of the main principles of DNRS is that, once you’re dealing with a chronic condition, focusing on your symptoms can actually reinforce that state of fight or flight. So we actually try not to talk about our symptoms (except, of course, in cases where’s absolutely necessary, such as when at a doctor’s appointment).

This took me a while to wrap my mind around, but over time, it made more and more sense to me. Focusing on my health didn’t cause the problem, but now that I was in this situation, I had to do everything possible to get my brain out of chronic fight or flight.

That’s why you won’t find me writing too much about my physical symptoms in this post, or on my blog in general. I will say that I have seen an improvement in my physician symptoms, and that I have every reason to recommend DNRS to others.

I do want to tell my whole story at some point, but for now, my brain is a “construction zone” of hope and healing, so the rest will have to come later :)

However, here are some of the DNRS recovery stories that have personally inspired me on my journey– definitely check these out!

I saw a comment on Twitter today which really broke my heart, so I wanted to write this and make it clear:

If you are experiencing pain hypersensitivity (through central sensitization), there is every reason to hope.

If your nervous system has changed one way, it is possible to change it back.

It won’t be easy, and the way forward won’t always be obvious. But you can do it.

If you are experiencing central sensitization (as the result of an injury, a trauma, or other extreme physical or emotional experience) you have become more sensitive to pain than you used to be. Your body is using pain as a way to protect you, but it is treating you like you are made of glass. It is trying to protect you from everything.

Scientists are still researching the myriad of ways in which this happens. So far, they have identified multiple different mechanisms within the nervous system which can cause this extreme response to pain.

However, the good news is that we don’t need to know everything, yet, about how this process occurs to start treating it. (Although our treatments will only get better in the future, with more knowledge).

But you can start, right now, by learning what your body is capable of, and identifying the things your nervous system is warning you about that aren’t actually dangerous.

***

For me, it took a really smart and capable physical therapist who had studied with Neil Pearson. I expect that you will need a guide as well– someone who you trust, who can walk you through and help identify the ways it is safe for you to try to push through the pain.

Your best bet will be a physical therapist who has advanced knowledge of recent pain science. (A PT with this knowledge might not easy to find, at first, but luckily it’s becoming easier and easier. If you email me at sunlightinwinter12@hotmail.com, I can help you get started).

What you need is someone you trust, who you will believe when they tell you your body is capable of more.

Someone who is able to think flexibly and come up with more than one way to do an exercise, if you tell them the first way they gave you doesn’t seem to work.

Someone who will understand that it’s not only about what they learned about the body in school… it’s also about you, your nervous system, and your experience as a patient. Your nervous system has to be convinced that your body is safe, before it’s going to stop making things hurt.

Changing your beliefs about pain can have a direct impact on the pain you ultimately experience. When you truly learn and understand that your body is giving you pain in order to protect you, it stops being so threatening. This is known as changing your pain from the top down— from the brain to the body.

***

Of course– it’s equally important to keep working on your pain from the bottom up– from your body to the brain.

If you have chronic pain, or have suffered from some type of injury, your muscles are probably tightened into protective spasms. This, in turn, will make them weak, if it goes on for long enough.

So you have to work on the pain from both angles. You need to calm your nervous system down, and help it understand that not everything is dangerous. But you also need to give your body what it needs, and do everything that you can to help it function optimally.

***

Doing both of these things is a balancing act. Getting back in to shape is not about pushing through the pain. It is not a “no pain, no gain” mentality.

Instead, it is about being mindful. Being careful. (And again, ideally, having a trusted coach by your side).

To respect your nervous system, and to accept your body where it is currently at. Not trying to do too much, too soon, but instead starting where you can. If you can only walk for 5 minutes, walk for 5 minutes. If you need to ice your injured knee before you work out, ice your injured knee.

It’s about bringing all of these different things together, and figuring out what works for you.

For years I thought I needed to find a doctor to diagnose me with and treat me for fibromyalgia. I sought out various pain specialists; physiatrists and anesthesiologists, the heads of departments. Some of them even listed fibromyalgia among their clinical interests, which I thought was sure to be a good sign.

Yet every time I actually got into the exam room and asked one of those doctors if I had fibromyalgia, the response was vague. “I don’t know, I don’t generally diagnose people with fibromyalgia,” was the general answer I got.

After so many doctors in pain management failed to help me, I tried seeing a rheumatologist. I had done a lot of reading about fibromyalgia online and learned that they often treated patients with this condition. Of course, I ended up getting the one rheumatologist who tells his patients “there’s no such thing as fibromyalgia.”

After all this time, I have never actually seen a doctor who treats patients for fibromyalgia.

I don’t know how this is possible. I live in Boston– we have some of the best hospitals in the world. But this has been my experience.

However, between an amazing physical therapist, some caring medical specialists (see my suggestions for doctors below), and a lot of persistence and research on my part, I have still learned how to manage my symptoms and live a more functional life.

So, I’m writing this post for people who might be stuck in the same position I was once in. If you can’t find a doctor to diagnose you with fibromyalgia, that’s okay. You can still get all of the same treatments without an official diagnosis. You’ll just have to do a lot of your own research and advocate for yourself.

Understanding Fibromyalgia

To understand fibromyalgia, you need to know that research is increasingly pointing to central sensitization as its cause. Central sensitization refers to the changes that happen to a person’s nervous system to increase his or her sensitivity to pain and other stimuli. These changes are part of a very complex process that science doesn’t yet fully understand, and no one knows why it happens to one person versus another.

Generally, this process is thought to occur after the body goes through some kind of traumatic physical event, such as injury or surgery. It’s also more common among people who have an inflammatory condition such as lupus or arthritis, because their daily experiences of pain have an effect on the nervous system.

While not every doctor believes that fibromyalgia is a real condition, the phenomenon of central sensitization is much less controversial. I’ve had many productive conversations with pain management specialists about the fact that I probably have a heightened sensitivity to pain; this is something that can be addressed without anyone using the word fibromyalgia.

I’m not saying it should be this way– of course it shouldn’t. And I’m happy to say that I do believe awareness of fibromyalgia and other chronic pain conditions is growing.

In the meantime, I offer you these suggestions for moving forward:

Try consulting a physiatrist about musculoskeletal pain.

Physiatrists are a relatively new type of medical specialist (and no, I’m not saying psychiatrist!).

Physiatrists work in the specialty Physical Medicine and Rehabilitation. Basically, they specialize in all of the ways to treat musculoskeletal pain, and they are trained to look at the whole person, rather than focusing in on one body part. So a physiatrist may ask you about your daily life, and how your sleep is. They may offer you medications such as Lyrica or Cymbalta (see below). They may also offer different types of injections, such as trigger point injections, to help with muscle tightness. In general, they can help you think of solutions you may not have thought of.

Anti-depressant medications can treat chronic pain.

There are antidepressants you can take that have been shown to relieve chronic pain in some people. (When I say chronic pain, I mean pain due to central sensitization, the same thing as fibromyalgia pain). There are two antidepressants, Lyrica and Cymbalta, that are specially marketed for pain sufferers. You can get these from a psychiatrist that specializes in pain management or from a physiatrist (Physical Medicine and Rehabilitation specialist).

You can also see if traditional anti-depressants help you: many of them have been shown in studies to relieve symptoms of chronic pain, and you don’t need as high a dose as you would to treat depression. You can get these from a psychiatrist or even from a primary-care physician.

You don’t need a fibromyalgia diagnosis to try these medications. You just explain that you’ve been in pain in a long time and you’ve heard that these medications can help.

Make sure you are getting good, quality sleep.

One of the potential explanations for fibromyalgia patients’ heightened sensitivity to pain is that they might be experiencing disturbed sleep, which in turn wreaks havoc on their nervous systems. (Indeed, other studies have shown that when you take healthy, pain-free people and severely deprive them of sleep for a few days, they start to feel pain similar to that of fibromyalgia sufferers).

You don’t need a diagnosis of fibromyalgia to see your primary care physician or a sleep specialist. Perhaps they will order a sleep study to see if you have sleep apnea, or else suggest some sleep medications you can try.

Physical Therapy

The key is to find a good physical therapist– in my opinion, about 50% of the physical therapists out there are no help at all for issues of chronic pain where the nervous system has gotten stuck in a feedback loop. They’ll just look at you like you’re either lazy or crazy, and nothing will be accomplished.

What finally allowed me to turn the corner was that I found an amazing physical therapist. He had attended a training by Neil Pearson, and was able to explain to me why my nervous system was freaking out. This physical therapist helped me to see that just because I felt pain in one part of my body didn’t mean that there was something necessarily wrong with that part of my body. This helped to bring my level of panic way down and weakened the cycle of pain I was caught in.

The funny thing is that not once did my physical therapist use the word fibromyalgia. Neither did Neil Pearson in the online lectures I keep obsessing about all over this blog. Instead, they used the terms “chronic pain” and “persistent pain.” And both of those men helped me more than anyone else.

If at all possible, try to see a physical therapist that has attended a training by Neil Pearson, Lorimer Moseley, or any of the other amazing pain scientists I talk about on this blog. There aren’t many out there, but if you can ask around and read different physical therapists’ websites to see what they specialize in, it is worth itif you can find someone.

If you can’t find someone who has attended such a training, you can still benefit from working with a physical therapist who is really sympathetic and makes you feel comfortable exercising. Someone who motivates you without pressuring you into doing things you’re not comfortable with.

As you’ll see when you watch Neil Pearson’s amazing online lectures, pain is your body’s alarm system: when you do something your body isn’t comfortable with, you make the alarm system scream louder. You have to respect your body’s limits and exercise as much as you can within those limits. You might find that having a trusted physical therapist on your side will allow you to feel comfortable trying new movements that you wouldn’t be okay with trying on your own.

Digestive Symptoms

If you have digestive problems along with your fibromyalgia, you need to find a skilled gastroenterologist to help you figure things out. I had to go through five gastroenterologists before I found a doctor who said something other than “you’re obviously under a lot of stress. Try to relax.”

There are all sorts of things that you should be tested for if you have GI troubles, and a thorough doctor will be happy to order them for you. But if your tests all come back normal, you probably have irritable bowel syndrome, which is caused by nervous system changes similar to those that cause fibromyalgia.

Just as it’s possible for the rest of your body to have a heightened response to pain, it is possible for your digestive system to have a heightened response the things you eat. A good gastroenterologist and/or nutritionist can help you experiment with eliminating certain types of foods from your diet to see if your symptoms improve. Stress, of course, can be a factor, but it’s certainly not the only factor.

Conclusion

That just about covers the basics. I hope I’ve reassured you that you can get better, even if you can’t find a doctor who treats fibromyalgia at the present moment.

I’ll be writing more about the causes and treatments of fibromyalgia in the future. In the meantime, if you have any questions, you can leave a comment below or email me at sunlightinwinter12@gmail.com.